Health Related Quality of Life in Children with Thalassemia

Introduction: Thalassemia is becoming a serious public health problem. This chronic disease not only affects patients physical functioning but also their emotional functioning, social functioning and school functioning, leading to impaired health related quality of life (HRQoL) of the patients. This study assessed the HRQoL of thalassemia patients and also compared with that of healthy children.

Methods: This cross-sectional comparative study was conducted in the Department of Pediatric Hematology and Oncology (PHO), Bangabandhu Sheikh Mujib Medical University (BSMMU), Shahbagh, Dhaka. Forty five patients diagnosed with thalassemia between the ages of 5-18 years were included in the study from January 2023 to December 2023 as cases. Forty five age and sex-matched healthy children were recruited as controls in the study. Informed written consent was taken from parents. Demographic and clinical characteristics were recorded in the predesigned data collection sheet. Then Bangla translated PedsQL 4.0 Generic Core Scale was used to generate score of QoL of cases and controls and subsequently compared. Appropriate statistical tests were applied for data analysis and performed by SPSS 24.0. A p-value <0.05 was considered statistically significant.

Results: This study shows that the PedsQL 4.0 scores of thalassemia children are significantly lower than healthy children in the core dimensions of health. In the physical functioning, emotional functioning, social functioning and school functioning domains the scores are 61.84 (17.28), 61.44 (18.48), 75.44 (19.15) and 48.78 (30.3) respectively which are significantly lower (p<0.001) than the healthy controls. The total summary score is 61.3 (23.75) which is also significantly lower than the healthy children (p<0.001).

Conclusion: The findings of this study indicate that thalassemia has a significant negative impact on HRQoL which was also found to be worse than the children healthy counterparts.